Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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DID YOU SEE RESULTS FROM THYMECTOMY?

scidude
scidude
Well, I've been campaigning for a thymectomy for over a year, and we even had a failed attempt to complete one in January. It failed because no one realized that YOU SHOULDN'T TAKE A MESTONIN BEFORE THE SURGERY. And I took a big dose.

low O2 levels resulted in aborting surgery mid-attempt.

But I got stronger, lost more weight and completed the surgery Monday. Bilateral video assisted and it went well.

I'm very sore and bruised badly at bandage sites, but looking forward to possibly seeing my symptoms reduced. Maybe.

Anyone else with thmectomy see reduction in symptoms??? How long for these changes to take place?
debbie1973
debbie1973
Not sure what you mean by not taking mestinon before surgery. It's been 30 years since my thymectomy & I had mestinon with morning meds day of surgery. None after surgery for a few days. And I had 25 years of remission. No symptoms at all during that time.
Cj416
Cj416
Had my surgery in 2001 and the only thing I took was my normal medications Mestinon , prednisone , Imuran with a mouthful of water the morning of my surgery.

Glad to hear you finally were able to have your surgery as I can only imagine the frustration with the delays. A few months after my surgery I was starting to see a reduction in my meds , plex etc and had a good feeling that remission was in my near future.

Good luck , take your time healing and and it won't be long god willing that you see results.

Cj
deleted_user
deleted_user
Had my surgery in 2007 and as Cj and Deb said I also took my meds on morning of my surgery...Im so glad your second surgery went better and hope you start seeing results soon...I would say about 4 months or so after my surgery I started to also see signs of improvement and also was able to slowly cut down on meds etc...Still no remission for me but it is better for sure...I am down to 2.5mgs of prednisone and had to get off mestinon due to very bad side affects....Still have the fatigue and other things but very glad I had the operation...it has improved things greatly...Good luck and recover quickly....
wbdolphin
wbdolphin
I was taking Mestinon before my surgery but it was not helping my ptosis and blurry vision. Within two weeks after surgery, both symptoms were gone and 2 + years later, still blessedly symptom free.
annkemp
annkemp
They told me it would take a year....
And it did.
MaureenNY
MaureenNY
Scidude, just had my surgery on Tuesday, so nothing to report on results. However, I took mestonin right up to and including the day I had my surgery. I also had thyroid surgery, at the same time. I had a small thymoma, awaiting results Doc assumes stage I or stage II, either way it's just something to watchgoing forward. I am hopeful to get home and begin to live a little so I can see some results. I'm still in the hospital so it's hard to tell.

Maureen
scidude
scidude
thanks everyone!!!

THIS group got me to this point. I got so bad for awhile that I assumed my life was going to be like that every day. Wasn't going to do it. But I found this group at the last possible moment and knew that there was a chance I would see improvement. I have. Now the surgery. Hoping for even more improvement.

This disease is a total piece of crap, but I guess that it beats a massive heart attack or stroke as the "time to get your health in order" wake-up call.